Assume dying patient knows best, specialist tells hospice workers

A woman dying of AIDS came to York House Hospice in Pennsylvania "with her spirit intact" said Joy Ufema, the hospice director.

"She told me she would just like to go, but she was afraid she would go to hell for being a whore," Ms. Ufema told a group of about 75 nurses and other volunteers from Carroll Hospice.

"I told her God is pure love, and I have a lot of doubts about the hell thing."

The remark elicited soft laughter from the group.

"Dying shakes up your belief system and the patient's, too," she said.

Ms. Ufema is a registered nurse and thanatologist, a specialist in the medical, psychological and social problems associated with death.

She spoke on the terminally ill patient's perspective yesterday at "Hospice: Commitment to Caring," a day-long workshop.

She discussed the dignity that comes through with those who are leaving this life before us.

"Patients can be teachers, but this is their experience," she said. "We are companions who will go with them as far as we can."

For 20 years Ms. Ufema, now 49, has worked exclusively in the field of death and dying. She has published several articles and appeared on television shows. She told the group to trust intuition and remain sensitive to patients and their families.

"Ask a patient what he wants and then do it," she said. "Whether he is 19, 5 or 92, you can assume every dying person knows what is best."

She has heard requests to see a beloved pet, celebrate a last birthday with a twin brother, and for that cute, red-headed nurse.

"Keep your egos in check," she said. " 'What you don't want me? I was on Donahue' is not the appropriate response."

Honesty should mark conversations with patients, who sometimes want "confirmations instead of explanations," she said.

"We have few suicides among our patients," she said. "Most actually fight."

The two greatest fears facing dying patients are abandonment and pain, she said. They need to know they are surrounded with care.

"Shake their hands and talk to them," she said. "Just sit with them and listen to their concerns and fears."

Ms. Ufema said she has a real "bugaboo" about pain and said her goal is to keep dying patients totally pain-free.

"It matters how we die not that we die," she said. "We can't stop death but we can contribute to a good death."

Morphine in large doses is the most effective medication to control pain, she said. She urged nurses to be advocates for dying patients and to refuse to give inadequate analgesics.

means fighting on your part, but there is no reason in 1992 for patients to be screaming with pain," she said. "Get on top of the physical pain so the patient can deal with the pain of leaving a 3-year-old."

Care-givers must also know when to let go, she said, telling the story of a cancer patient lapsing into a coma.

"Her son was reading her the Psalms; her daughter held her hand," she said. "In those situations, if you have to, stand and block the door from portable chest X-rays and doctors wanting ** to draw blood."

Finally, she told the care-givers to take care of themselves.

"I don't mean two weeks out of every 50. Hospice work is different," she said. "It can wear you down, and people must understand that."

As she left, many volunteers said she was the reason they were involved in hospice work.